05/05/2026
While we don't care for LAM patients, we care for countless patients ignored by a broken system running at breakneck speed leaving so many without answers, solutions, or hope. If only more would see what is really happening and have the courage to leave the system. Until then we do our part to listen to those left behind.
She was 28 years old, in her first week on the job, learning how to keep other people breathing while her own chest filled with lymphatic fluid.
Liters of it. The job was anesthesiology training.
The imaging came back showing lungs that looked like lace. Innumerable cystic formations had taken hold of the parenchyma. The diagnosis was lymphangioleiomyomatosis, or LAM, a rare estrogen-sensitive lung disease that almost exclusively affects women of childbearing age.
The first questions she asked were not about how long she had to live.
They were about whether she could ever get pregnant. Whether the only effective medication, sirolimus, would harm a fetus. Whether pregnancy itself, a high-estrogen state, would accelerate the destruction of her lungs.
There was no playbook. There still isn't.
Anesthesiologist Lyndsay Hoy now serves on the board of the LAM Foundation, and she is one of more than 30 million Americans living with a rare disease. That's roughly 1 in 10 of us, on par with diabetes. And yet for women whose rare diseases sit at the intersection of hormones and reproduction, there is no coordinated framework of care. Nobody owns the coordination across pulmonology, maternal-fetal medicine, reproductive endocrinology, and genetics. The patient becomes the case manager and the expert by default.
Lyndsay had advantages most patients don't. A medical degree. A physician partner. Institutional access. Colleagues to phone for second, third, and fourth opinions. And even with all of that, she says the answers still felt incomplete.
What does it look like for the woman who doesn't have any of that? Geography decides. Personal connections decide. Proximity to a tertiary center decides. The bandwidth she has on top of her diagnosis decides.
That is embedded inequity. And the new wave of investment in women's health, menopause research, maternal health, the conditions finally getting funded, will scale around what is easily scalable. Large cohorts. Routine playbooks. Rare diseases will get left behind again unless someone champions their inclusion now.
Send this to the woman in your life living with a diagnosis nobody has heard of. Send it to the resident who is also a patient. Send it to the friend who is the case manager for her own care because no one else will be.
Listen to the full conversation on The Podcast by KevinMD. Link in the comments.
What do you wish someone had told you about navigating a rare diagnosis when you were first diagnosed?